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WORD FROM THE COORDINATOR |
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“Hommage” to those who do the work! Thank you!
Dear all!
Those of you who have been involved in the time consuming and bureaucratic process of self-evaluation and/or preparation of the on-site audit will hardly find the time to read our newsletter. But you should! This “word of the coordinator” is a tribute to those who contribute to the functioning of ERN-LUNG, to fulfill the many tasks and bits of work – including evaluation - that are needed to make it happen. There are some who say: “We cannot…” and there are many others who struggle hard to do what they are asked to do.
We all have a strong feeling that this extremely bureaucratic evaluation only takes resources away from our central role, keeps us from looking after patients or other activities which are aimed at improving our patients’ situation. Yes, no question this is the case. But if we fail to show that the idea of improving the situation for RD patients in Europe can best be improved by close cooperation across European borders – that’s what European Reference Networking is about – then there will be no sustainable funding and no continued networking. There will always be those who argue, that the money spent for this kind of networking would be better spent for other activities, diseases, or different models of cooperation.
We hold against that ERN-LUNG has managed to establish a structure that all patients can rely on: They can easily address the top European experts in the field of rare diseases of the respiratory system irrespective of where the patients and where the experts are (EXABO). Care team members can easily utilize the same system to get second opinion and confirmation or affirmation of their ideas concerning difficult questions. In our “3-Step-Approach” of cross-border care we offer expert panel discussions (step 2) when online advice (EXABO, step 1) is not sufficient to help and, of course, we offer cross-border referral (step 3). Why do we need a network, why do we need an ERN for that? One good reason is to make clear where the experts are, that every citizen of the European Union can trust, it not being a matter of luck or someone luckily knowing someone, it is a quality guarantee!
Yes, we are convinced that we offer the best possible quality. And, we have to show it, prove it, evaluate it. And, we all have to thank all of you who have understood that evaluation is a necessary though tedious part of our work. Evaluation drives quality. It is, therefore, no question that we need evaluation. The only question is, how to best do this? I can promise I will – together with all other ERN Coordinators – continue trying to make this evaluation process smoother and easier on all of us.
Thank you all for your efforts and continuous support
TOF Wagner, Coordinator of ERN-LUNG
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We are pleased to announce that we have added two new members to our Network Coordination Team as of December 2022.
Lisa Gietz is currently responsible for the implementation of the ERN 5-year evaluation and many of you have surely already met her through her very intense efforts and her great support of the ERN-LUNG members during this very challenging period. Dorothea Berger is now actively supporting us with all the project specific financial aspects and we are very happy to have both of them in our team!
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New European Joint action planned
ERNs are going to be funded for another funding period of four years starting in September 2023. The European Commission has decided to also fund an additional European Joint Action for the integration of ERNs and national Health Care as an attempt to overcome that the ERNs do not have clear interactions and patient pathways defined in the respective national systems.
The Coordination of this Joint Action and the complex and multifaceted application for funding is being prepared by Austria. All other Member States are actively involved, including Germany, and via this involvement the Coordinator of ERN-LUNG, TOF Wagner, will also be involved. All of the activities planned in this Project are closely linked to the future of the ERNs, e.g. sustainable funding, interaction with national Reference Networks where they exist or establishing new National Reference Networks where ever that seems possible. The Project will also address the “Undiagnosed Patients”, the integration of RD patient data on a European level (European data space), and will try to extract from the existing models of financing National Reference Networks and come up with a generic model for all Member states. |
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RARE DISEASE DAY 2023 |
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Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease and was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners. Rare Disease Day is observed every year on 28 February. By Sharing your colours via social media, events, illuminating buildings, monuments and homes, by sharing experiences online and with friends, by calling on policy makers and shining the light on people living with a rare disease, collectively we aim to change and improve lives of the 300 million people worldwide. |
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All ePAG MEETING 2022 |
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Have a look at the report from the all ePAG meeting which took place in 2022 summarizing key aspects of all four sessions of the meeting. |
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ERN-LUNG ACADEMY - UPDATE |
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The ERN-LUNG Academy has started its activity! For 2023, first year of the Academy, we recruited 43 participants from 13 EU Member States, and 3 non-EU Member States. Apart from the theoretical part, participants will be able to observe the network's specialists during one week at one of our Healthcare Providers. ERN-LUNG organizes these stays, and thus creates a network for future specialists of rare respiratory diseases.
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Find out more about the "booster" to accelerate research for rare and paediatric disease |
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‘Rare Disease Moonshot’ – Scaling-up public-private partnerships to accelerate research into world’s rarest diseases |
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Stakeholder meeting on short term mobility (DG-SANTE) |
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The final stakeholders meeting on Short term mobility and exchanges of healthcare professionals for European Reference Network (CHAFEA/2019Health 16) was conducted by DG SANTE on 10th February 2023. The aim of the meeting was to: share and analyse the experiences gathered in the past 2.5 years with the organisation and implementation of short-term exchange visits for ERNs, and formulate the lessons learnt, as a valuable input for the future of the exchange programme. In the meeting, ECORYS presented an analysis of the results of the Programme, the views of visitors and hosting centres on the value of exchange visits as well as recommendations for future implementation. 4ERNs - ERKNET, eUROGEN, PaedCan and EuroBloodNet shared their experiences, success factors identified and lessons learnt.
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Exchange of good practice webinar/EURORDIS: Patient-Clinician Team Building |
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ERN-LUNG has, in connection with EURORDIS, participated in sessions on good practice of Patient-Clinician Team Building. There is still some work to be done there! Both parties need to acknowledge the importance of building a common language, and defining common means to achieve the same goals: best care for as many patients as possible.
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Information session on Multi-beneficiary / Mono-beneficiary grants |
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An information session on Multi-beneficiary / Mono-beneficiary grants by Theodor Haratau (HaDEA) on the 31st of January 2023. Over 64 participants spanning over 24 ERNs had participated in the online session. Models on multi- and mono-beneficiary grants were spoken on. Topics presented were on the impact of multi-beneficiary grants on coordination and the activities dealing with 10 Work Packages, impact on the budget and the need to define tasks over the next 4 years. |
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ABM 2023 - UPDATE! |
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The official registration for Annual Board Meeting will close by the 10th of February 2023. More than 90 participants have registered and we look forward to seeing everyone on the 22nd and 23rd March, 2023. The participants are encouraged to book the hotel room by themselves with the keyword "ERN-Lung" and can contact the hotel under the email: contingent@cp-frankfurt.com or reservation@cp-frankfurt.com.
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EURORDIS BLACK PEARLS AWARD 2023 |
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The EURORDIS Photo Award allows people suffering from rare diseases to visually express what living with a rare disease can be like and share their story with the rare disease community. |
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ERN 5-YEAR EVALUATION -UPDATE |
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We are amid the second phase of the 5-Year evaluation, the self-evaluation of our HCPs and our network. While our members prepare their self-evaluation forms, the preparation for the next phase, the technical evaluation has started and dates for on-site audits are discussed. The technical evaluation will be held in chosen healthcare centres in the format of online and on-site audits between the 20th of February and the 5th of March. If you need any support with the evaluation please contact our new project manager, Lisa Gietz (Lisa.Gietz@kgu.de). |
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ERN-LUNG Annual Board Meeting (ABM) 2023
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➔ Let us know if you are participating in any conference where you will be presenting ERN activities and results
➔ Let us know if you have published anything recently (2022) so that it can be highlighted on the ERN-LUNG website |
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The aim of the funding opportunity is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with expected impact to use the results in the future for benefit of patients |
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ERN-LUNG Coordinating Center: University Hospital Frankfurt
Theodor-Stern-Kai 7 60596 Frankfurt am Main, Germany
Copyright 2021 ern-lung.eu | All Rights Reserved
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